Proceduralisation, choice and parental reflections on decisions to accept newborn bloodspot screening

@article{Nicholls2011ProceduralisationCA,
  title={Proceduralisation, choice and parental reflections on decisions to accept newborn bloodspot screening},
  author={Stuart G. Nicholls},
  journal={Journal of Medical Ethics},
  year={2011},
  volume={38},
  pages={299 - 303}
}
  • S. Nicholls
  • Published 20 December 2011
  • Medicine
  • Journal of Medical Ethics
Newborn screening is the programme through which newborn babies are screened for a variety of conditions shortly after birth. Programmes such as this are individually oriented but resemble traditional public health programmes because they are targeted at large groups of the population and they are offered as preventive interventions to a population considered healthy. As such, an ethical tension exists between the goals of promoting the high uptake of supposedly ‘effective’ population-oriented… 
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TLDR
This project highlighted the importance of focusing on information receipt and identified key communication barriers and the drivers of cost-effectiveness for alternative modes of information provision in newborn (neonatal) screening.
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This study will provide empirical data comparing stakeholder opinions on their understanding of consent-related terminology, the perceived applicability of different consent approaches to newborn screening, and the requirements of these different approaches.
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TLDR
This study will provide empirical data comparing stakeholder opinions on their understanding of consent-related terminology, the perceived applicability of different consent approaches to newborn screening, and the requirements of these different approaches to be reported in peer-reviewed publications and conference presentations.
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TLDR
It is concluded that expanded notions of benefit and burden bring with them implications for parental consent and confidentiality and the secondary use of bloodspots and the potential benefits and burdens of expanded newborn bloodspot screening.
Informed Choice for Newborn Blood Spot Screening in the United Kingdom: A Survey of Parental Perceptions
TLDR
The findings support previous studies that screening may be seen as a fait accompli and indicate that allowing time to make a decision may help parents feel that they have made an informed choice.
Consent for newborn screening: parents’ and health-care professionals’ experiences of consent in practice
TLDR
The experience, in practice, of consent for NBS was explored and three themes were relevant to NBS consent: The ‘offer’ of NBS; content and timing of information provision; and the importance of parental experiences for consent decisions.
Education and Parental Involvement in Decision-Making About Newborn Screening: Understanding Goals to Clarify Content
TLDR
The resulting conceptual framework supports the availability of comprehensive information about NBS for parents, irrespective of the model of implementation, and argues that meeting parental expectations and preferences for communication is an important goal regardless of whether or not parents are actively involved in making a decision.
Implications of newborn screening for nurses.
TLDR
Issues in newborn screening care are reviewed and opportunities for nurses and nursing faculty to provide education and conduct research to improve the impact of newborn screening are reviewed.
Considering consent: a structural equation modelling analysis of factors influencing decisional quality when accepting newborn screening
TLDR
The results implicate the presentation of screening as a key determinant of decision quality both in terms of the immediate information regarding the potential benefits and risks, but also the way in which consent processes are managed.
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References

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TLDR
Overall the intervention did improve satisfaction and awareness that the test was optional with no increase in levels of worry, but some mothers felt they had been given a choice about screening, but were not aware that theTest was optional.
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TLDR
It was found that women were aware of newborn screening, however desired further information in order to acquire a more comprehensive knowledge of the test, and were supportive of using blood samples for medical research, contingent upon the samples being de-identified and parental consent provided.
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TLDR
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TLDR
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  • Medicine
    Health expectations : an international journal of public participation in health care and health policy
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TLDR
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TLDR
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TLDR
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TLDR
It is argued that simplistic assessments of knowledge through recall fail to reflect more complex notions of understanding, and is drawn on qualitative interviews with parents of children who have undergone newborn bloodspot screening.
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TLDR
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